JanMarch07

Happy New Year!

January 3rd 2007 - LONG over-due update on Ally

Dear Family and Friends - Email sent 1/3/07

I'm sorry I haven't sent an update in awhile. The holidays are such a busy time of the year and Ally has had some complications lately. I've been emailing with my SMA support group and working with her doctors, but haven't been able to keep family and friends updated - Sorry, I know many of you are thinking of us often. At the bottom of this email are some of the updates that I have written on her website or important emails I have been sending to the support group or doctors. I'll try my best to summarize some of this at the top of this email, but if you'd like more details..feel free to keep reading (in your spare time)...

Ally's 11 month birthday was yesterday - January 2nd! Every month I am happy for each day we have and hope that we are one day closer to a cure for SMA and Ally staying as strong as possible.

Unfortunately, Ally currently has a slight case of pneumonia. She began with a small fever on Christmas and after taking her in to the doctor on Dec. 28th, we learned from an x-ray that although her fever was gone and she seemed okay, she had a small amount of fluid at the base of both of her lungs. It's good that we caught it early, but it is still VERY scary. She is on ominicef antibiotic for 10 days and we are doing her respiratory treatments at least every 4 hours. The medicine is working and is breaking everything up, but as it works, Ally has extra and thicker secretions that make it harder for her to breathe or can cause blockages. She mostly rests on her bi-pap machine that gives her deeper breaths of the natural air. Nights have overall been better and she can be off the machine for a few hours playing with us and enjoying her DVDs and cartoons. We are fortunate to be able to have her at home as we have learned so much about her care in the last few months. We also have some nursing assistance on most days M-F during the day while Billy is at work. We have three nurses who rotate days and have become a part of our home and family.

Last night, Ally gave us another HUGE scare at around 8:30 pm. She was satting around 96-97 for oxygen while off of her breathing machine and then all of a sudden she had a terrible panic face. She had a mucus plug and stopped breathing completely. It was very fortunate that I was playing with her, because the alarms on her machine did not go off until many minutes later after she turned blue and I was working on clearing the blockage with her cough assist machine, ambu bag, and oxygen. Billy assisted me immensely as Kristyn watched on. She didn't want to leave the room when asked. After many rounds of treatment, Ally's color came back and the blockage was gone. Then she was smiling again within 10 minutes. It's so scary how something can happen so quickly, but it's a reminder how precious life is and how no one should take anything for granted. I'm sorry to share such scary situations, but I think it is important for those close to us to know some of what we are experiencing.

Because of Ally's illness, we had already cancelled our CA medical trip planned for January 4-6th. This was a bit disappointing since we had paid for a ticket for Kristyn to travel with us since she is on Winter Break, but Ally's immediate health is most important. We probably lost us and Mercy Medical Flights quite a bit of money, but that doesn't matter much in the large scheme of things. I'm not sure when our next trip will be, but probably the second week of February.

In January, Ally (if feeling well) is going to part of a special luncheon for the Muscular Dystrophy Association and we have a meeting/get-together with the Illinois Families of SMA. I am actually their new secretary since I want to help spread awareness in IL and get families as much support as possible.

February 2nd will be Ally's 1 YEAR birthday! Only 1 month away. On February 3rd is Ally's fundraiser. We are hoping to have a HUGE turn-out and have a ton of donations to raffle and auction off. Now that the holidays are over, PLEASE purchase your tickets soon if you are in town and able to attend, OR please let us know if you would like to purchase raffle tickets. You can also help by selling raffle tickets or inviting friends and family. Kids are VERY welcome to attend too. I'm attaching the Fundraiser flyer again since it may have been misplaced.

Thanks again for all your support and prayers,

Tina and Family

January 7th 2007 - Hospital Update

Hello Everyone,

Many of you know that Allyson had an x-ray on 12-28-06 and had a slight pneumonia at the base of both lungs. We tried omnicef antibiotic at home and extra respiratory treatments for about a week. Ally seemed to overall be getting better (sats were better and no fever), but had a rougher morning on Thursday 1-4-07, so I decided to take her to Children's Hospital in Chicago for an x-ray and to get some thoughts on how she was progressing with her pneumonia (better or worse in her lungs). I also wanted to check into her getting an IPV machine.

Ally was admitted to the PICU (Pediatric Intensive Care Unit) since the x-ray showed her left lung was completely filled and the right was blotchy. The plan was to do IV antibiotics and aggressive respiratory therapy. Unfortunately, we had quite a few bumps in the road trying to get things going smoothly for Ally's treatment at the beginning. One even included that she panicked and stopped breathing in the ER when her x-ray was being done due to a major error in judgment by the technician and her NOT listening to me as a parent who best knows my child! Luckily, I had Zuella (one of Ally's home nurses with me) and the two of us got Ally through it safely, while the hospital fumbled to get the oxygen going. I've also needed to work hard at getting Allyson a truly aggressive respiratory treatment plan. Dr. Schroth has (once again) helped with some consultation when I was unsure. She is AMAZING!

On Friday, Ally began getting treatments every two hours and each treatment lasts about an entire hour. The respiratory therapist are rotating with myself and the nurses so that this can be accomplished. Friday and Saturday night, Ally's respiratory therapist was absolutely amazing and taught me a TON of things. The nurses have also been very willing to help out, so I have trained them and the RT's how to do Ally's treatments. ***By Sunday morning, Ally's right lung is great and her left is also almost cleared up!!!*** It feels SOOOOO WONDERFUL to know that our hard work is truly helping Ally and worth every minute.

; ) There is a good chance that we will be able to go home this week!!! We just need to be sure to continue with the aggressive treatments so that the lung continues to clear up! I don't really have much access to email, but thought I should try to send a quick update since I know all of you would want to know what's going on. I'll try to send anther when I can.

Thanks for all your continued support and prayers,

Tina

PS - If you really need to get a hold of me, you can call my sister Sandi at 847-587-8678 or 847-875-5304

January 8th 2007 - Hospital Good News

Hello Everyone,

Thanks sooooo much for ALL the prayers and well wishes that have been coming our way. Some have asked, we are at Children's Memorial in Chicago (like Nate on chat thought).

- Thank you to Kathleen/Chloe and Alisa's family for sending cards already. It was a neat surprise.

I don't want to jinx it, but Ally is doing AMAZING!!! The treatments every 2 hours have REALLY paid off. She was also on unicef antibiotic, xopenex every 4 hours and pulmazyme every 6 hours. This morning, Ally's x-rays were COMPLETELY clear. The pneumonia is gone in both lungs and she is so happy (of course so am I). Her oxygen sats have all been 95-100 and mostly in the very high 90s both on and off bi-pap. She was off her bi-pap breathing machine for 5 hours in the morning and about 3 hours this evening and never dropped below 95. This is REALLy good for Ally, as her average is 93-96. The docs are amazed and we should be going home before the end of the week. My goal is Wednesday or Thursday, but they want to be sure she gets enough IV antibiotics and she doesn't slide back. We switched today to respiratory treatments about every 4 hours, but they still last about 1 hour each. Ally had OT and PT therapy in her hospital room today and really enjoyed sitting up for quite awhile. I think this is the best she has been in months. We will be re-working our treatments at home to keep this up.

I also left the room a couple of times today when Billy (my husband) came after work. I went out to get a quick bite to eat with a friend and took a shower in the NOT so lovely parent shower. At least I am clean.

I will try to send another update soon, but hopefully from home. I found out my laptop works in the room, but will need to get a little rest.

Thanks again for keeping us in your thoughts,

Tina, Ally and Family

PS - Please say a prayer to the little boy's family that was in the room connected to Ally's. After over 10 codes today, he passed away this evening at about 9 months old. Boy was it a difficult day seeing all the doctors running back and forth and now the family coming to say good bye. I'm not sure of everything, but he had severe cardiac and respiratory problems. My heart truly goes out to the family. I'm sure he is now a peaceful angel. Sorry to share this sad news, but it has really affected me and the family can use some of all of our prayers.

January 12th 2007 - Ally update from home 1-12-07

We are home now, thank goodness! Ally is doing VERY well and her oxygen sats are higher than they have been in months. She used to sit at 92-95 and even lower and that was the norm. Now she is 96-100, unless she needs respiratory treatment. It's like she's a new girl, talking away (well babbling - but I think I hear "ma ma") and has lots of movement, including her sitting in her tumble form chair. I was really worried about how much muscle and movement she might lose during this illness, but somehow she has come out stronger.

She did give us a little (BIG) scare this afternoon. I was laying down and the nurse was watching her while she slept on her bi-pap and was in the high 90s, then went down to 93 and was trying to cough. Zuella moved her over to cough and she turned blue immediately since she must have had a plug. Kristyn and got me and with oxygen attached to the cough assist, and blasted to 6 L, we got her breathing again. Nothing big came up, but it moved out of her airway pretty quickly after tilting Ally's head all the way back and using the oxygen. Her g-tube (stomach tube for feeding)got pulled out again with the balloon inflated during all the excitement (since she was still eating), but that was no big deal at all. We just put it back in after things settled down. I actually had switched it to a new one this morning since the balloon that keeps it in her tummy was completely deflated and had a leak.

Boy, does Ally keep us busy. But every moment is worth it! She's such a little angel with her smiles and now talking.

Kristyn is an amazing big sister, and stayed calm during everything today. I'm very grateful that she was able to get me quickly to assist the nurse. Then she wanted to go play with friends. Melissa started back in pre-school today and insisted on wearing a dress that she tried putting on herself. She also had fun playing with a toy drill at a MOMs Club luncheon we went to earlier in the afternoon.

Well, I better find something to eat. I plan on starting a diet soon, but Krispy Creme donuts are calling me for dessert.

Hope you have a nice weekend!

Tina

TUESDAY, FEBRUARY 06, 2007 08:17 AM, CST

Email that was sent to update therapists on 2-6-07

Hello everyone,

I'm sending this to ALL of Ally's wonderful therapists, nurses, main doctors, EI and DSCC so you are all a bit updated.

Ally (knock on wood) is doing overall VERY well again with her respiratory health and her movement. Depending on the day, she is sitting in her Tumble Form for 30-120 minutes and is doing very well attempting her switch toys. She is also talking/singing up a storm.

This month, we went to Rehab Institute of Chicago (recommended by Dr. Gaebler) to see the OT, speech and engineer for augmentive communication and making special adaptive things for Ally (slings/slant desk...). They are wonderful there and had some great ideas of things to do with Ally. Let me or them know if you need a report of their evaluation and goals. I just realized that I think it was only sent to me and Dr. Gaebler and it is very thorough and great.

Here are some highlights:

1) Ally was lent a microlight switch with a switch latch timer. She operates this very well. She also used a IST (infrared sound touch) switch very well.

2) We also used a MAC button attached to the switch to encourage Ally to tell us when to turn the pages of a book or lift the flaps to see what was underneath.

3) We began to use pictures and symbols to teach Ally how to make choices between things.

4) The engineers are going to design some type of slings for Ally so that she is able to use the bottom half of her arms and hands more. ***I have pictures below of another family's slings for ideas.***

5) They are also going to create some type of slant desk so that Ally can play more easily when she is laying flat and/or on her side.

This were just some of the highlights. I'm sure there is more. Here is the contact information if anyone needs to contact them. I also gave them Kristi, City Kids and JoAnne's information.

Thanks again for being a part of Ally's life and her successes! Please see the pictures below. I may have some additional ones to forward soon.

Thanks for your time,

Tina

February 9th 2007 - Beginning of Ally's 5th trip to CA

Just wanted to let everyone know that we made it to CA safely. We had a ton of good luck today and I decided to bring my computer so I could work on it if I was bored or couldn't sleep. It's 3 in the morning and here I am up...

- I called ahead to TSA (airport security) and it went very smoothly again. One of the supervisors meets us at the gate and they walk us through. Ally stays in her stroller laying down with her pulse ox and suction. They barely pat her down and around her stroller.

- All liquids are immediately approved because they are for medical reasons. This is one of the main reasons I call. I can now even bring open water for Ally's machines and g-tube flushing.

- The TSA remembered her from last time and said how much she has grown (her hair mostly) and asked a lot about her. I think it is great to make these connections so things continue to go smoothly.

- United Airlines had all our paperwork with the flight attendants and they even remembered our names without looking down at it. They were VERY friendly and very helpful.

- United did promise that they were able to set up an outlet for Ally's bipap. They attempted, but it did not have power. Luckily we brought our own and it worked completely fine. I come prepared.

- Ally did wonderful on the plane. We put on her bi-pap a tiny bit before take off and left it on the whole time. She slept most of the time and stayed in the 90s the whole time (except for one quick dip in the 80s since she wanted to be suctioned). We bring a pillow and she lays across mine or Billy's lap.

- We ended up with an extra seat since the lady who was seated with us quickly and nicely volunteered to move anywhere to make it more convenient for us.

- We rent through Dollar and have the Express membership, so that went really fast and we were on our way.

- We are trying a new hotel in CA, the Best Western. We are very impressed with the cleanliness, spaciousness and nice staff.

- Later today is Ally's appointment. She will give blood, see Dr. Wang just for a simple exam, and get her new clinical drug rx. She goes up a dose this time to Level 4 in the Double Blind placebo stage. We start the Open Label (drug for sure) in May. We think there is a very good chance that Ally is getting the real drug now though.

- Only one mishap today! I decided to try to pack some beverages and food in our checked baggage for the hotel. Of course, I needed to have some bad luck and a can (OF BEER) some how opened up or was actually sliced kinda. Most of our clothes were wet, but I don't even care. The day went so well, we can wear the same thing or pick something up at Target today.

Hope everyone else starts their weekend as well as we did,

Tina

February 9th 2007 - Ally's 5th trip to CA - after appointment

Just a quick update, before I maybe go to bed. I already had a little nap, so I'm unsure how my night will go. Believe it or not, Allyson is still sleeping through almost all nights (knock on wood), but it's me that can't sleep most of the time.

Ally had a GREAT appointment. God is really watching down and I think he/she knows that I needed things to go smoothly after the h*ll I have been dealing with in Chicago and with her pneumonia.

* They drew blood with NO problems at all. They only needed to look at one arm and we were in and out within 5-10 minutes. No need to ambu bag or use the cough assist, like I usually need to do when she gives blood (every 2 weeks for the 1st part of the clinical trial).

* They quickly let us go straight into the room before giving blood. I told them that I was worried about all the germs and they understood! Wow, they understood!

* Ally (with her clothes on) weighed 14 lbs and 7 ozs. This is the most she has ever weighed!!! I've been giving her a bit extra food and watching her closely and it seems to be working. I'm not sure what my goal weight is for an SMA 1 Child at 1 years old. Any thoughts?

* Dr. Wang was wonderful as usual!!! We talked all about the paper/project that he just submitted on Quality of Care for SMA children. He hopes it will be published soon and then all doctors will be able to see in writing that there IS hope for SMA children.

* He is VERY willing to travel to Chicago to talk about SMA and quality of care. He also talked about him, Dr. Schroth and Dr. Swoboda setting up more trials in multiple sites for Type 1s.

* He was very impressed with how well Ally is doing. She is lifting her elbow to her face, starting to hold her knees up and moving her legs a pretty lot. This is great for so early on in the trial.

* We didn't need to do the Muscle test this time, but we will in March. I'm hoping to maybe have a family member or friend come with me to CA, so Billy can work. Any takers? It will be for 3 days, probably around March 13-16th.

* Billy and I had a wonderful lunch/dinner at Olive Garden. We haven't been to a restaurant in a couple of months. It was pretty enjoyable with only a little suctioning and Ally slept a little.

* We even got to shop at Walmart to replace some of our beer drenched clothes. I got a couple of things for the girls too.

* Just finished my chocolate, cheesecake dessert! I'm not sure when my diet will ever start, but I'm not going to stress myself. I actually wore jeans instead of sweats this week.

*Our flight home tomorrow is at 1pm, so hopefully things will continue to go smoothly. Thank you god and thank you everyone for your prayers and well blessings.

Tina

PS - Did I forget to mention that it is 60 degrees F in California? It's a bit rainy, but off and on. I was hot with a sweatshirt. Maybe we should stay instead of going home? No, I need to get back to my other two angel girls.

February 18th 2007 - Short update

I'm uploading some of the emails I previously wrote about Ally, so I figured I should write a little more since I constantly get behind.

Ally is still doing well with her respiratory status and her feedings have gotten much better too. We have mostly stayed inside for the last month except to go to her Fundraiser/Birthday and our CA trip. It's just not worth taking her out in the frigid, cold, winter weather that we are experiencing in Chicago. I even picked up her 1 year old and RSV shots so the nurses could give them at home.

Ally had a great Valentines Day and all the girls got a ton of cards from other SMA families. She has recently tried chewing on a Twizzler and has enjoyed licking on a lollipop. I think ice cream is her favorite though. She only gets very small amounts, but it's great stimulation for her mouth. She has been talking, or attempting to talk, a ton. It's so cute to hear her.

She spends a large portion of her day watching videos. I try to pick somewhat educational ones. Her favorites are Jay Jay the Jet Plane, Teletubbies, Barney, Little Bear and Baby Singing Times. Baby Signing Times is really neat since it shows toddlers signing and there's a ton of music. Melissa has been trying to read Ally the books that go along with the dvds. Ally just smiles really big when her sisters interact with her.

Kristyn went to a Sib Sensation class on Saturday and wrote a great story about Ally and how she feels. She is also an amazing sister. Billy and I are very blessed to have 3 great daughters.

March 10, 2007

Hello friends, family, docs.....

**I realized I haven't sent an update in awhile and should accompany one with all the pictures I emailed out. (Let me know if you didn't get them and would like to see them**

Ally is doing well, overall. She might be refluxing again since she occasionally makes faces and some small de-sats, but no more spit up or throw up (did this 2 times total). We are having a g-tube check/xray (kinda like upper gi) on Wednesday. I just want to be as pro-active as possible so we don't have more trouble. I hate having to go to the hospital though.

She sat up for over an hour this week, so that was a great sign. She also loves her new DVDs I got her. Her favorites are Baby Signing Time, Laurie Berkner Band, Teletubbies, Jay Jay the Jet Plane, Barney and Baby Einstein.

Ally just got ALL the extras about a week ago for her Max EasyS stroller/wheelchair. I'm not sure why some of them were not ordered by the Rehab guy in IL at the beginning, but I got the MDA to help pay for them. This includes the indoor hi-low base, sleeping bag for outside, big sun/wind shade, oxygen tank holder, butterfly harness, tray for playing, medical necessity bag.... I LOVE it. Now ExoMotion is going to have an hour phone conversation to talk me through everything, so I use it to its fullest potential. The IL guy really didn't help much with that. I think he is more familiar with the Kid Kart.

We are in the process of interviewing new nurses, since one of ours is probably leaving since she has already gotten one case closer to home (she travels over an hour to us). We are really going to miss her. Now the training will begin again. I hope we find someone good. I'm a bit nervous.

Melissa, my almost 3 year old, is FINALLY beginning to go potty on the toilet. She has sat there MANY times, but finally seems to understand and actually went about 4 times. Now, only if I had more time to work with her. She also got to go out to preschool this week. I hope to be able to bring her out more, now that the weather is getting warmer. She is an EXPERT puzzle creator. She loves doing 24 piece puzzles and can do them very quickly after only being shown a couple of times. Her birthday is April 24th.

Kristyn, my 10 1/2 year old, is Sneezy in her school's Snow White play. She continues to do very well in school and is a HUGE help with her sisters.

GREAT NEWS - We will be gutting out our entire basement (where we live below my mom's home). We are starting fresh and creating rooms that will best meet Ally's and our family's needs. It will start in a few weeks and hopefully only last about 1 month. We will live upstairs in the meantime. My mom is so wonderful to do this for us!!!! We are going to try to help a little with the cost, but things add up quick. It will change our lives though. We are not ready to purchase our own home yet (financially or emotionally). It's great to live below my mom for support. Family is so important to me. If only we could be on one of those tv shows....

Next trip to CA for Ally's Clinical trial is March 21-23rd. This time she will have the MUNE or muscle test, blood work and see Dr. Wang. I think he will be impressed with all that Ally is doing. She even holds her legs up when her knees are bend for a little while. She is also doing a good job at brining her hand to her mouth and sitting. She wiggles her legs and so much more ; )

Well, I better end this long update.

Hope everyone has a great weekend,

Tina